Illness, Part 8: Meds

I made a prediction to my family: "Watch. I'll go in (to the doctor) and say, 'I feel great,' and they'll say, 'Your blood levels look terrible!'" Sometimes, I like to make predictions that I'm positive are a sure thing, so that my loved ones will be impressed by my prognosticating prowess.

Almost a year ago, my thyroid was removed. It was enlarged and covered in cysts, and my life has been better without it. My biggest problem since then has been the attempts to regulate my medication. Without a thyroid, I'll be on medication for the rest of my life to do the job the gland used to do.

The problem is that mine did its job badly - hence its removal. OK, that's not the whole problem. My body chemistry has never been quite right. I've never had regular periods. I've had diagnosed hormonal issues since I was in my mid-20s, over 20 years ago. I was having trouble getting pregnant, and the OB-GYN ran an MRI and found pinpoint tumors in my pituitary gland. That's worse than it sounds, despite the fact that it means brain tumors. One, they were tiny, very tiny. Two, my last MRI, taken a few months ago, came back clear. We have no idea if that means that they shrunk, that they were never there or that the new scans weren't read properly. The doctor who originally diagnosed the tumors has long since retired, and the original scans have been lost, so they are not available for comparison. Sigh. (At least my blood work shows that my body no longer secretes breastfeeding hormones, years after I stopped breastfeeding. That was one of the originally documented "Huh?" moments.)

Over those 20+ years, I've also had blood tests designed to tell me about my thyroid function over and over, because I've always had symptoms of thyroid issues. Every time, the doctors looked at the results and said, "Your thyroid is fine" - until it had to be removed. (Yeah, dozens of symptoms, persistent over decades, or a blood test - which one are you gonna believe?)

Since then, my endocrinologist and I have discovered that I am something of a paradox. I feel better with a chemical composition that usually makes people feel worse. "I've read about people like you," the endocrinologist said to me, "but I've never actually met one before." So far, we haven't tried to figure out why this is; her office is still trying to wrap its collective head around the fact that it is.

Normally, the higher the concentration of thyroid produced hormones in the blood, the better a person feels. They have more energy, more mental clarity, they lose weight. When the concentration is too low, they are exhausted, mentally foggy, sluggish and gain weight. Doctors have been trying to increase my dosage since weeks after the surgery. Every time, I feel awful. I sleep for 14, 16, even 18 hours a day, but it takes hours to fall asleep. I'm grouchy, have no energy or focus, and get sick easily. Drop the dose, and I sleep normally - I fall asleep quickly, and I wake up 8 to 9 hours later (without an alarm). I have energy. I don't need naps. I rarely get sick. I feel better than I did before the surgery. I like feeling this way.

The problem is that how I feel does not match how the medical literature says I "should" feel.

The medication prescribed for me after the surgery was apparently one of the most common. We had never managed to get me back to the way I felt in the weeks immediately following the surgery, when I felt great but was "supposed" to feel my worst. It was workable but annoying - especially since any time I said, "I'm tired" or "I'm always exhausted" the response was, "We'll raise your levels." NO! That's what caused this feeling!

Then, the manufacturer discontinued that medication. This, it turns out, was actually a good thing. I had to scramble to get in to see the endocrinologist, because I found out that the medication was unavailable when I had a single day's worth left. Silly me. Anyway, I had to see the doctor, because, heaven knows, they can't prescribe medication for a known, documented, unchanged condition without having you sit right in front of them. (I was originally told that I'd also need a blood test first, but they dropped that condition when it turned out that the lab could not get results in time.)

"Well, if you felt good on (the last medicine), I'd just prescribe one that's almost identical. Since you're not happy, though, let's try something new," she said. She prescribed a different medication "that functions totally differently inside your body. For some people, they feel better almost immediately." It's made from the dehydrated thyroid glands of pigs, and was the go-to medication for decades before humanity decided that Better Living Through Chemistry was the Answer to Everything, and naturally derived medicines were for the uneducated and superstitious. Many people who don't respond well to synthetic thyroid hormones do well on this medication. (I frequently refer to them as "my pig pills.")

She told me that I might feel better "almost immediately," so I woke up the next day pretty much thinking, "Show me what you've got." I didn't feel better - or worse - immediately, but after a week or two I did. I like these pills much better. I feel much better. My sleep habits resemble a normal human's - something that has not been the case for most of my life.

I'm supposed to take one pill first thing in the morning, and I never forget. I'm supposed to take one midway through my waking day, "to give you an extra shot of energy to make it through the day," and I frequently forget that dose. For one thing, it does not give me "a shot of energy." I don't really notice the difference at all. I usually forget until close to bedtime, and I'm not supposed to take it too late in the day, lest it cause insomnia. So, if I forget, I just take the next morning's dose. After all, I feel great. If it ain't broke, don't fix it.

When I went in for my first checkup after starting the new regimen, I'd been on these pills for about 8 weeks. I saw the physician's assistant (PA) instead of my doctor, which is fine. She's very sweet and competent, despite the fact that she spends most of our time together typing into her computer. I don't blame this on her, but on the current medical culture's need to obsessively document EVERYTHING. This time, she asked how I was doing, how I liked the new meds, and was all smiles with my answers - which boiled down to, "I feel great" - until she called up my labs, done three days previously.

She actually gasped. "I would expect you to be barely functional, like a zombie, with numbers like this! It looks like you're not even in treatment!" The more she stared at the screen, the more agitated she became. "I can't let you walk around with numbers like this!" Then, "Maybe it's lab error. We have to seriously consider lab error with numbers like this." Then, the dreaded sentence: "I'm going to have to increase your dose." UGH!

"I frequently forget to take my second pill. Can we hold off at least until I manage to get the hang of taking both doses?"

"How frequently?"

"More than half the time." This, frankly, was giving me more credit than I deserved - for the first two weeks, I hardly missed any second doses, but for the last month, I think I've remembered a whopping three times.

"The doctor's going to wonder why I let you walk out of here with numbers like this." Then, grasping at straws, "It takes a while for the medication to build up in your blood stream. Maybe it's just not showing up on the tests yet." Yeah, sure, whatever lets me flee the office without a new prescription.

"I get really tired of hearing that my numbers look great when I'm miserable," I told her. This is not new ground we're covering here.

"Of course, of course. You want to be treated like an individual."

See, that's the entire problem. Modern society makes no distinction between individuals. Last time I said almost the exact same thing, "I hate hearing that we have to keep my numbers at a level that makes me miserable," to my endocrinologist, the smile froze on her face and she said, tightly, "I can be held liable if it's determined that I've failed to provide you with a proper standard of care." I have intellectually understood that insurance companies and fear of lawsuits weigh more heavily than health issues and patients themselves in the health care system, but now I find myself smack in the middle of the morass and angry about it.

See, let's first talk about the terms "normal" and "average." "Normal" means "the majority of people fall into this category." ("Most" or "majority," of course, is anything over half.) "Average" is a mathematical term. It means either that you have taken all the available information, added it together and then divided it by the number of individuals it represents, or that it is the exact middle, with half above and half below. Scientists, mathematicians and average people will tell you that nothing is ever 100%. Just because a piece of information represents "most" people, it will never represent all people. Yet, insurance companies and other entities insist that everyone must fall into that middle area. They see no legitimate reason that anyone should ever be above or below that mark. It seems so clearly obvious that some people will fall above that mark, and some will fall below, but they don't see it that way. Everyone must be kept in that middle range, because, by golly, other people need to be there.

This is why, even though I had persistent symptoms of thyroid issues, I was told for decades that I "must" be fine, because the blood tests showed that my hormone levels were in that "normal" or "average" zone. It is also why, even after it was determined that my thyroid was diseased, the health care community feels compelled to return my body to the same body chemistry that existed when I was suffering from disease. It's "normal."

I am thankful that my endocrinologist is at least willing to listen to me. She hears and understands what I have to say. I'm lucky, though, that I fall below "normal." She's willing to let my numbers run low because, "It's far more dangerous to run too high than too low." What if my body's ideal was higher than "normal?"

Still, I feel that I have to fight. My doctor has to straddle the line between keeping me happy and explaining her actions to the insurance company; the company can refuse to pay for any treatment that is not considered "normal." Plus, she has to worry that, one day, I or a family member might sue her because I was not kept in that "normal" range.

I mean, if normal levels were not good for me, it seems obvious that something other than normal would be ideal. And why should anyone but me or my doctor make these choices? Why is it any business of my insurance company? I fear having to fight these battles again in the future, because I'll be on medication for the rest of my life, and my doctor will eventually retire.

So, I left with instructions to "Set an alarm! Don't forget that second dose!" Two out of three days I've remembered. That's progress.